After multiple doctors could not help relieve her suffering from pain so severe she could no longer walk, Katie Bickford sought help at Kennedy Krieger’s Pediatric Pain Rehabilitation Program and today, has her life back.
Katie Bickford remembers the pain starting in the 7th grade—it began in her spine and radiated out all over her body. The pain got so bad she couldn’t walk. To make matters worse, she fractured her heel, and then her arm, so it hurt to use crutches. She used a wheelchair to get around, but in her house where the wheelchair wouldn’t fit, she resorted to crawling, developing thick calluses on her hands and knees. She could no longer function and stopped going to school.
Her bone fractures were a result of osteopenia— weak bone density—likely caused by the chemotherapy treatment she underwent at age 4 for acute lymphoblastic leukemia, now in remission. But doctors could find no direct cause for the full body pain she was experiencing. She saw multiple specialists, and despite trying medication and outpatient therapy, nothing seemed to help. Over the years, the pain only worsened. Eventually, doctors recommended that she see a psychiatrist.
Katie felt like the doctors didn’t believe her and thought she was making up the pain. “I used to stay up at night and cry. I felt like I was defective.”
“It was terrible,” recalls Mary “ML” Bickford, Katie’s mom. “We were scared. We believed in her and we knew the pain wasn’t in her head, so we kept fighting for her.”
A psychiatrist told them about the Pediatric Pain Rehabilitation Program at Kennedy Krieger, which specializes in treating chronic pain resulting in disability. Katie was first seen in the outpatient multidisciplinary Pediatric Pain Rehabilitation Clinic, and then admitted to the inpatient unit. At 14, she was diagnosed with complex regional pain syndrome, a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems.
“When Katie arrived, she was very determined and motivated, but cautiously optimistic,” says Katie’s therapist, Melanie Bierenbaum, PsyD. Katie had been through therapies before without any results. But Kennedy Krieger took an integrated approach to treating the pain. She was evaluated by an interdisciplinary team, including specialists in rehabilitation medicine, education, neuropsychology, therapeutic recreation, psychiatry, and occupational, physical, and behavioral therapy, to help her cope with the pain.
“Patients feel like their body has turned on them,” explains Dr. Bierenbaum. “We try to help them understand that they can regain control over their body.” One of the techniques therapists use is biofeedback—using instruments to measure physiological responses, such as brainwaves, heart function, breathing, muscle activity, and skin temperature. When patients implement cognitive and behavioral coping strategies, they can see themselves calming down on the computer screen, reestablishing a sense of control over their physiology.
For Katie, guided imagery helped her cope with the pain. “I imagine I’m with my horse Piper or doing other things and it helps me be okay with the pain,” she says. “When it gets really bad I’ll stop and listen to a CD and focus on the music, and it resets where I am. My whole brain takes a break for a second.”
With her physical therapist, Katie gradually began rebuilding the muscle she had lost while in a wheelchair. She used desensitization techniques to learn to put weight on her foot, and soon moved on to walking with crutches, and then with a cane.
“With all of the therapists so willing to help, it really pushed me to put my all into learning to walk again and learning to cope with my pain,” Katie says. “They believed in me. When I wasn’t sure I could do something, they were always there in the background saying, ‘You can do this.’”
When her parents visited her, they were thrilled with her progress. “When she saw us coming down the hallway, she got up out of her wheelchair and was walking,” recalls Gary Bickford, Katie’s father. “By the second week, she said, ‘I’m done with the wheelchair. I’m done with the crutches. I don’t need these anymore.’” The bright light was back in her eyes and the smile back on her face.
Katie’s parents met with Dr. Bierenbaum and a social worker to learn how they could help Katie learn to not focus on the pain. “It’s hard because when my only baby says ‘I hurt,’ I want to hold her and make sure she’s okay. But what I really need to do is help her focus on something else—not deny that she’s in pain, but not focus on it.” With the help of her therapists, Katie learned how to better communicate what she was feeling, and her parents learned how to respond to her.
“The quality of staff at Kennedy Krieger was amazing,” says ML. “They’re like angels. There is no way I can put into words how wonderful a relationship they made with Katie, and how well they were able to motivate her and turn her around.”
When she had progressed enough to be discharged, Katie was armed with the coping techniques she had learned to help get back to the life she knew before the pain. When summer came, she was at the beach with her friends every day like any other teenager. And in the fall, Katie was able to go back to school, participate in activities like JROTC, and even ride her horse again. The highlight of her year was going to the prom with her new boyfriend.
Although she still feels pain sometimes, Katie is able to cope with it, and it no longer rules her life. Now she has time to focus on more important things, like being a teenager.
“I definitely feel Kennedy Krieger gave me my life back. I couldn’t ask for anything more.”
Patients feel like their body has turned on them. We try to help them understand that they can regain control over their body.
Melanie Bierenbaum, PsyD, former predoctoral intern and postdoctoral fellow at Kennedy Krieger Institute